Your Story, Our Progress: Join the MdDS Patient Registry

Advancing MdDS Research is Easy as 1-2-3

Every patient’s journey with MdDS is unique, and for so long, the MdDS community has needed a central way to record our unique experiences. Today, we are thrilled to announce that the MdDS Patient Registry is officially open for enrollment.

We invite you to join this landmark initiative, the first natural history study dedicated to our global community. More than just a collection of surveys, the registry is a research study designed for you. As a participant, you can:

Track Your Journey: Use our easy-to-use Symptom Severity Scale to measure symptoms reliably.
Compare and Contrast: View your data in comparison to others within the registry.
Be the First to Know: Receive notifications about upcoming clinical trials tailored to your history.

Infographic titled "MdDS Patient Registry: The Research Study Design" showing the three-step process: Step 1 Enroll, Step 2 Unlock Insights via one-time surveys, and Step 3 Drive Research through repeated surveys tracking MdDS status over time.

We designed the study (visualized above) to be streamlined and as easy as 1-2-3. Step 1: Enroll in the Registry. Step 2: Complete “one-and-done” surveys. Step 3: Drive research by participating in a repeating cycle of short surveys.

Powered by the National Organization for Rare Disorders (NORD®) IAMRARE® platform, your privacy is protected while your story contributes to a global understanding of MdDS. As a participant, you will have the unique opportunity to view your data in comparison to others in the registry, helping you track your own progress while contributing to a global understanding of MdDS. Join today to unlock MdDS insights.

Join the Study

This research study has been reviewed and approved by an Institutional Review Board (IRB). Your participation is voluntary and your data is secure.

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